A Crocodile Full Of Hope.

 

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Aubrees never shown emotional attachment to a toy before, she shows preference when playing she’ll choose what she wants but she’s never got the emotional side of wanting a toy to cuddle, if she had something that didn’t make a noise or light up she wasn’t interested!
Until this little crocodile came on the scene. We went to a Wildlife Park a little while ago and we always buy a little something from the gift shop whenever we go somewhere like that, and we always try to let her choose. Well everything there was too little and fiddly or fragile or was a stuffed animal that did nothing, so we thought we’ll just grab something and that’ll be our momento for that trip. I was looking at the Ty toys and picked up an owl and a crocodile, both of which we’d seen that day, and offered both to Aubree so she could choose. Now normally at this point she’ll show mild interest and then swiftly lose it preferring to nose at what other people are doing. She deliberately reached for the Croc and had a good feel of the material (with lesser seen fine motor skills woohoo!) and would not let him go, so of course we bought him.

Since then he’s been everywhere with us, to town, to the vets with our cat, supermarket shopping, Physio, hospital, he was even there when she had her surgery and MRI in April. She’s grown so attached to him words can’t even explain how happy that makes me, I’ve never seen her cuddle anything like this, and it might sound ridiculous but to make a connection like that takes some level of cognition and it’s just so wonderful to see. His name is Pippin and he’s here to stay 😊

A Crocodile Full Of Hope.

What I Wish I Could Say, On Bad Days.

I’m not okay.

I wish I could say this. I want to so many times. When asked how I am. Instead my knee jerk response is “Yeah you?”And then I immediately segue into talking about you. Asking how you are. What you have been up to. Steering as far away from the subject of me as I can get. Because I don’t want to ruin a good conversation, because I don’t want to make it awkward, because I don’t want talking to me to be a burden. Because I want everyone to believe I am the strong invincible woman I pretend to be. Because I don’t want to seem weak and needy. Because I don’t want to cry. Because I don’t want to dwell on the awful fog that shrouds my brain making everything 50 times harder and much more exhausting. Because I think if I can convince myself it’s a good day, then the fog will blow away.

You see I can be fine, truly fine then it’s just like a switch goes off and all of a sudden I’m not fine, I’m not okay, I’m left with darkness in my mind that is all consuming. I forget how to smile, how to laugh, how to feel anything except the emptiness. I can’t connect with anyone on bad days, it’s like a fast rushing river runs between me and everybody else and even though I really do try, I just can’t cross it. Sometimes I become so engulfed in the brain fog that I completely shut down, stare blankly at something for much too long and won’t speak all day, I do the barest amounts I have to, I won’t shower, I won’t eat, or I’ll eat too much. Light seems too bright, sounds are too loud and the fatigue is hell. This exhaustion is not something simply resolved by sleeping, it’s soul deep. I seem lazy, the house is a mess I’m a mess I’ve done nothing all day because I’m just so tired, so severely overwhelmed with everything that even the smallest tasks seem like mountains.

Depression is cruel, there are no fevers, no rashes, no blood tests. Just the slow erosion of self, as insidious as cancer. And like cancer, it is essentially a solitary experience. A room in hell with only your name on the door.  I have been doing better recently, tablets are helping, I answer more honestly now if I’m not okay, it’s hard and shameful but cathartic. Bad days are few and far between, but always lurking on the periphery.

I am okay, and sometimes I’m not, but that’s okay to.

I must also have a dark side if I am to be whole.’ – Carl Jung.

What I Wish I Could Say, On Bad Days.

D (iagnosis) – Day.

 

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For the best part of 2 years we were lead to believe Aubree had Cerebral Palsy, for the best part of 2 years we grieved and grew and learnt everything we possibly could about CP. This picture was taken 1st April 2016 after my 3 year old went through her first surgery and second MRI on her brain, April fools huh? Several weeks later her neurologist offered us an appointment at the drop of a hat saying he needed to see us ASAP. So of course the alarm bells start to ring, what could be so different with these results that he needs to see us straight away?  We know her brain is damaged, what more could they possibly find?

As it happens it’s not what they found, rather what she lacked. He explained that you have 2 types of matter in your brain, Grey and White. The Grey is your actual brain cells and the White is the bits that connect all of your cells together, think of them as wires. Wires need insulation to conduct a current properly, the ‘insulation’ in your brain is called Myelin. Aubree has absolutely no White matter in her brain, she has no insulation, therefore her wires can’t conduct sufficient signals, hence her motor disorder.

This condition is called Pelizaeus (pel-ee-zay-us) Merzbacher (merz-back-er) Disease. It is an astonishingly rare progressive disorder of the central nervous system affecting co-ordination, motor abilities, and intellectual function. It is named after 2 German physicians who noted the presentation of the disease. There are less than 1000 cases worldwide. As it’s progressive our neurologist explained that she will learn limited skills until she reached 7/8 years old, then she will rapidly lose them. Alongside this she also has Global Developmental Delay, Seizure Disorder, Gastro-oesophagul Reflux Disease, Optic Nerve Hypoplasia and Postural Kyphosis.

So it feels once again like we’re in an ocean of uncertainty with this strange new diagnosis that no one has ever heard of, trying to stay afloat. Just when we thought we knew everything about her it ends up being something else entirely, all of a sudden everything is different yet nothing has changed. I don’t know what the future will bring, and that is really hard to live with. All I know is Aubree is the brightest, bravest soul and we are truly blessed to be the ones to raise her, and if she can fight through each day then we can to. Come what may, my beautiful girl.

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D (iagnosis) – Day.

You.

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By letting go of the things I wished you could do and be, I made room for seeing you as you are, and you are perfect beyond the meaning of the word. You’re funny and so happy, I wish everyone could look at you and see what I see instead of your limitations, instead of thinking “poor little girl”. I see your brilliance which cannot be dimmed by a brain that doesn’t function the way it was intended to. I see your determination, your frustration, your joy, your love. You make me proud every day, I hope you know that. I hope you know how special you are, how important, because there is no me without you.💟

You.

Flawsome.

I knew almost nothing about people with special needs until I had one, a child with a brain malformation, a “special needs” kid. I hate all these terms, special needs, disabled, brain damaged. I like the term “a different kind of perfect.”

My daughter has a rare disease and she is a different type of perfect.

People tell us we are amazing for what we do for our daughter. They say we are strong and she came to the right place. They say these things when we catch up with friends or family, usually on a day when we are having a good day. That is the only reason we left the house (could leave the house).

They see her when she is OK, when she is not exhausted from therapy and she is happy and smiling. When she is like this, we have a moment to catch our breath, be normal.

What they do not see is the times when I am not strong, when it is all too much and I want to scream, when I think “Please can you just stop and be normal, please.” They do not see her when she has screamed for hours or days. They do not see the times when we can just hold ourselves together and we are not strong.

I wonder if they notice how we have changed. Do they see that behind our eyes there is a deep sorrow? A sorrow that has been there so long it is impossible to comprehend being the people we once were. Sometimes it feels like the light inside us has gone and we just stumble from one day to the next waiting to see what type of day awaits us.

I worry about her, I worry about my partner and I worry about me. How long can we do this, is this forever? How can people do what we do and not go insane? Years and years facing the impossible and fighting to get through today knowing the same awaits tomorrow.

Our daughter has taught us many things. It is important to keep positive and seek for the joy when you can find it, and that can be the only thing keeping your head above the water.

That is why people think we are strong, because we just get on with it. Keep going, just keep going. If I was strong, I would not have bad days. If I was strong, I could deal with the emotions in my life. I don’t. I bury them and pretend they are not there.

I have no time for self-pity and I do not have the luxury of having time out. I have no choice but to take a deep breath and keep going.

I am not amazing, I am grumpy, I am tired, I am scraping through one day to the next. I am just a person that became the parent to a beautiful daughter, a different type of perfect child.

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Flawsome.

I have carried you, always.

I Have carried you, always.

Before you were conceived, I carried a part of you in my soul. When I met your father, I looked into his eyes and saw the other part of you, and knew you, and prayed that you would come to be.

Before you were born, I carried you in my womb. When you were restless I sang to you and soothed you and told you how I loved you.

When you were born, I carried you in my arms. I kissed you and held you close so that you would know that there is light and warmth and goodness in the world.

Later, I wrapped you in clothes and carried you close to my heart. I held you so that you could hear that my heart beats like yours; that we are the same, you and I.

Now, I carry you still, so that you can look at the world with confidence and joy and know that you belong; so that you can share all of the beauty of the world as an equal to all that live in it.

So know that no matter how weary you become, or what life holds, you can always depend on me for support and comfort.

When you grow older, my darling, know that I will carry you till the end of the world. I will carry you in my heart, for you are always with me.

I will carry you, always.

I have carried you, always.

The Harsh Reality.

Special needs parenting is humbling, and rewarding beyond words, but it’s not always good.

My mum often reminds me that we have to take the rough with the smooth, and she’s right of course. One can’t exist without the other, so while we have tremendous highs in this special life we also have devastating lows. It’s knowing your child will always be in a battle against her body, a battle I can’t fight for her. It is having a house full of medical equipment that you need daily. It is having to invite countless people into your home to help your child when you’d just love to cuddle up in your pajamas and have a lazy day. It’s having to deal with strangers staring. It’s the the utter exhaustion that follows stress, depression, and sleep deprivation.

It’s the journeys to physical therapy wondering if today will be a good day. It’s the discouraging evaluations. It’s doctors appointments that fill up my calendar. It’s trying to squeeze some normality into all of this.  These dark things can add up, and they feel sometimes like they are smothering you while you’re working so hard at being the very best parent to your child. They can make you question your own worth, and sometimes make you feel like you are failing. Not every day in my house feels inspirational. Some days are so dark that it takes everything I have to get out of bed. I cherish every waking moment with Aubree, she is my best friend. Her disability has taught me so much. But with all beauty there is pain. Behind every victory there was a struggle.

                      ‘I must also have a dark side if I am to be whole.’ – Carl Jung.

The Harsh Reality.

I hope that I loved you enough today.

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I hope that I loved you enough today. I hope that everyday you know that you are loved and that nothing can ever change that. I hope that you know I am so proud of you. You are the best thing I ever did. I love you fiercely and I hope you always know that. Not just in the long run, but through every single frustrating and magical day.
Did I love you enough today, little one? I sure hope so.

I hope that I loved you enough today.

Friends, and how they vanish.

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Friends don’t often hang around when you have a special needs child. Everyone walks their own paths through life and life is busy for everyone, it is often 10 times as busy for parents like us. Keeping in touch with people is very hard and I’ll need at least a weeks notice to make plans to meet up with anybody,and even that depends if we have any free days.

I have a friend, who goes out of her way to be there for us, no matter how many times I’ve had to reschedule due to appointments. Friends like her understand what we’re going through and truly care about us and my families wellbeing. Never underestimate the value of family and good friends, they are there for us through thick and thin, when I can barely cope, and when I am ploughing through fighting for what we need to make things okay.

Friendship now is simple, I have filtered out a lot of people. People who are not willing to be part of our complicated life, and that’s fine, I wish them well. I’ve got my family and few friends that may as well be family, and that’s perfect for us.

Friends, and how they vanish.